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Upstream, Your post was helpful in that you are honest with your feelings. By reaching out you touched many...myself included. I just want to say that you are not alone. There are so very many caring people on this site. Every time I post they always have so many thoughtful comments and good advice
I miss my mom and she is still here with me. The dementia is taking a very intelligent woman away slowly. My prayer for you and many others is that we love and endure. Take care
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I am so very sorry about your Dad and what you're going through. Our precious Papa had dementia for 10 years then died of it at age 92. It truly is losing your loved one bit by bit. I just took what blessings I could from being with him and there for him. The miracle for us was that even at the end when he no longer knew who he was or anything else, he knew us and would say, "that's my girls." He was in a nursing home at the end and we'd go every day to spend time with him. His last day he was not conscious so we held his hands, reminisced to him, sang and hoped somehow he heard us. It is horrendous to watch a loved one to through this. We just had to take it a day at a time and love him. Prayers for you and your father. Hugs.
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I have no advice for you except to keep reaching out to other's for support and to take care of yourself. This isn't easy. ((HUGS))
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Dear Upstream, when I say I feel your pain, I do. I'm also in your situation, except I'm my mother's caregiver. I too look for the end, mother has stage five and osteoporosis together which makes it another challenge. There is no " at least you still have them"comfort, because they're already gone, the person you knew and loved doesn't exist any longer. I wish I had the words to make you feel differently,but I don't. Just ask for patients and peace. We're all here for you
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I'm right there with you, grieving while alive....it IS so incredibly heartbreaking....
There are lots of folks here in that boat with us....I did it with my mom and now my dad....
The way I cope is to stay present as possible....in this moment....not allowing my mind to drift to the past or the future. And when we have good days, to be really-really grateful for those good days. And nurturing myself when we have bad days (he's oblivious)....allowing whatever emotions to come up and then to keep going.

The good thing out of all this, is that I have a greater appreciation for the little things........and I move slower. Moving around with greater sight. I have more compassion and patience for others. It really very quickly put things in perspective.....it's expanding my consciousness.

Keep coming back when it gets overwhelming....we are all here for each other.
Blessings to you, sista
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I am also an only child who cares for a mom with dementia/alzheimer's at home. It is hard for friends to understand what you are going through. As you said once a parent dies you grieve and move forward. We are in a situation where we grieve every day for the person that is no longer there but you still have to care for them as if they were. Mom rarely talks but otherwise she is healthy. I take great joy in those days when I tell her good morning or good night and she actually says it back and/or laughs at me. Every once in a while I will say "I love you" and she will say "I love you too"...Doesn't happen often but when it does I relish in those moments. I do believe that although they can't express themselves, somewhere deep down they know you are there. I try to focus on the blessings that God has allowed me to be healthy enough to care for her and every morning when i have to get her up, cleaned and in her chair..I ask for God's to give me hand. I know it's not easy and on those days when you are sad, don't feel guilty about having a good cry or even wishing things were different? God understands we are human. Try to notice of little things like if he smiles at you or pats your hand. Try making him laugh by making faces. My mom will usually laugh or make them back and that is a nice moment.
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Upstream - I totally understand how you are feeling. My dad, aso has dementia, has lived with us for a year now. When he moved in he was able to do almost everything he did before he was diagnosed. Every time he gets sick, his dementia progresses quickly. He also has sundowners disease so he is not getting enough sleep which makes the dementia seem so much worse. We have someone coming in 20 hours a week to help him with showers, shaving and exercise. He complains all the time that his caregiver is cheating us. Apparently that’s the paranoia part of the disease. He is not my dad anymore which breaks my heart. Reading all the comments really helps me not to feel so alone. Hugs!
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MIL is only one still living. Her decline started about 6 years ago but has been more pronounced in past 18 months. While she lived with us for nearly 5 years, a year ago she reached the point of needing additional care. She is now in assisted living. We went through some of the stages of grieve before finally accepting that this is the reality we now face. This forum has been very helpful in understanding this disease and realizing that each person's path is different. It also helps to learn that our situation is not as extreme as what others face. While my earlier note mentioned that we faces this with each parent on both sides, there has been little overlap so we could deal with each one at that time. Some must learn to handle the pain of dimentia with multiple people at the same time. While MIL normally is in a fog, about three months ago we had one day where her mind was clear. Our only explanation was that this was a gift from God that we need to cherish. Best to you on this difficult journey.
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Heart goes out to you. My wife and I have faced this situation with both sets of parents even though the path differed with each one. Hang in there. Finding humor in some of your loved ones day-to-day situation helps. Sometimes laughing at the situation keeps you from crying. Basically, you are dealing with death twice. Once of the mind and, later, the body.
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Upstream - it really is a long and lonely road. And it is certainly unique for everyone. People try their hardest to say the right things with the best of intentions - your grace in those moments is key ;-). It certainly can't hurt to reach out in forums like this and other support groups for caregivers of those with Dementia or Alzheimer's. To be around people who are experiencing a little of what you are helps. Good that you're reaching out. Hang in there. Cherish the good days and remember that the bad days will pass.
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You are now grieving him which is why you are upset - when he actually passes away you may not grieve much because you are now 'pre-grieving' the loss of what made him really be him - when someone dies you miss their spirit not their body because it is what he said, his humour, his advice & his love not his blue eyes, grey hair & you are loosing so much of his spirit now - that's why we all love those occasional sparks of the 'old dad' that happen - just know you are not alone in feeling this way - if it gets you too much maybe go for a bit of grief councelling
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I'm slowly losing my father to deminta as well and yes it's the hardest thing to witness. My father lives with me so I know the hurt it causes. Sending you my prayers and strength. Hon, try to stay strong
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I, too, am an only child and my dad is suffering with Alzheimer's. Suffering is the correct word. Sometimes he knows me, sometimes he can't quite figure it out. He gets very confused if there is deviation in his route. He babbles with no coherent thoughts. He needs help dressing, showering, shaving. It is maddening to see his body outlive his brain. You are not alone in the very unglamorous journey.
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I understand Upstream's feelings all too well. I've watched my Mom die from Alzheimer's disease just to have my husband diagnosed a few months before my Mom's death. I'm sure people who havent been through this aren't in a position to really understand. To me it's like I've already lost my husband and it was the same with my Mom. I'm taking care of my husband at home and there is no end in sight after 4 years. Right now he can still basically take care of his own personal needs, although not very well. I try to live day to day and not worry about what the future holds. I just pray that something else will take him before the Alzheimers because I think that would be a blessing for both of us. You do feel guilty for having these feelings because you know the only thing that can save him from this prolonged disease is death. He is on every medicine available which is only prolonging the Alzheimer's and you have to wonder if taking all these things prolonging the agony is the right thing. But, it's what the doctors tell you to do and you just try to do what you can. It's hard seeing a once vital person who now looks normal but cannot really carry on a conversation with you or understand any simple thing you say. We've lived in the same place for 50 years and he doesnt know where the bedroom is among other things and he is always wanting to go home. How sad that he is home but in his mind he isn't.

He enjoys company but no one wants to visit. I guess It is because they dont know what to say or are afraid they will say the wrong thing as they often do. Others visit those who are sick with other illnesses but not this one, not even those you thought were friends for the most part. I hear comments like I dont know how you do it. There are days when I don't either and I do not know how much longer I can. I read recently that you must make the most of whatever life has for you and be happy in that circumstance. So, that's what I try to do and I pray a lot. Through Gods word he tells me not to worry about tomorrow so I pray he'll take care of that for me when tomorrow comes.
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My sweet, caring friend, I can only say that I too cry every day for my mom, who is just like your dad. I cling to my memory of her when she truly was my mom. Now she is a lost little being who poops in her pull up, in her chair. I would not have imagined this would have ever happened to her. The only thing I can say is hold on to those memories of their life before this terrible brain damage seized their precious lives. And be there to catch them when they fall, as they did for us. It is a heartbreaking sacrifice but we must do it for them, as they did for us. It is true and unselfish love.
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People who haven't walked in your shoes often say unhelpful things. Anyone who has had a loved one go through the difficult decline of dementia knows that it is agonizing and we can often wish for an end to the suffering. Losing a parent is never easy, but watching this type of decline over years is unbelievably painful. I'm dealing with this with my mom. Please know you are not alone.
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I went through the long goodbye with my dad. By the time he passed I had been through most of the grieving process already. Even when my dad didn't know who i was anymore, he knew i was someone who loved him. If there are any support groups in your area, that would be helpful since you are going through this without siblings. Try to find moments of joy with your dad. Does he like to listen to music from when he was growing up? My dad enjoyed going for car rides and getting ice cream. My heart goes out to you. I am now going through this journey with my mom, although she still knows all of us. Her main issue is hallucinations. Finding this website is a good thing too. I wish id known about it with my dad. Everyone here is going through similar situations. I've gotten a lot of good info and ideas from here. Just keep being the loving daughter you already are and know that you are making a difference in your dad's life and you'll be able to draw a lot of comfort one day when you look back at this time, knowing that you did the best you could. You will also emerge a stronger person. Take care of yourself and know that there are many of us out there going through this together. Hugs
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Many comments. Well, some are right on and then the advise sometimes is hard to understand since we "haven't walked in the shoes of others". My wife has been in Assistance in Living now over four years and the dementia is still on that slippery slope. We play Triominos almost daily. She likes it and so do I. BUT, the situation is such that if she had cancer I could see an end. BUT, the many health issues will not take her life. God is in complete control of our days here on earth. During that time we have a job to do and that is to pray, read HIS Word and trust HIM for the help we as care partners need daily. I trust in the living God and from a human standpoint it is sometimes overwhelming. God will never leave me nor her. She has a strong belief in HIS Word and knows that as well - how I praise God for that!
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There are certainly things worse than death. The people who you were "lucky" probably didn't know what else to say. They probably thought it was a comforting statement because they only saw it through their eyes and their longing for their lost parents. Please try to forgive them. Yep, with dementia we are in it for the long haul. I get comfort by coming to this website daily.
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Upstream, you are not alone in this. Many of us are living our own version of seeing an elderly parent die a little more each day. I'm living that with my mother, and it's tearing my life apart. I didn't know it would be this way.

I used to wonder how people could lose an elderly parent and bounce back the next week. Now I know why. It's because they actually lose their mother or father long before the moment of physical death, have already worked through the grief, and see their actual death as a moment of relief and release.
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I know what you mean. I am an only child and my mom has dimentia with other mental illnesses bipolar schitzoaffective disorder. I had to get guardianship over her. She is only 73 yrs old and physically fine. She is blaming me for being in the nursing home. When I go to see her she doesn’t want to see me. In the last hollered screamed for me not to go back She tells lies but I guess she really believes them It is hard being the only child and it’s a different kind of grieving no one knows unless you experience it. They are physically here but in so many ways not the parent we knew. It’s the hardest thing I’ve gad to go through. We used to have a great relationship. That is pretty much over and now I feel responsible or to blame she is in nursing home. She says she is getting out soon to her sisters. And to my daughter. Everyone agrees she needs to be there. I truly feel like she would be dead if she hadn’t gone in there almost 2 years ago. But she’s not happy or has not accepted being there anyway. There’s no way I can take care of her in the state she is in. Doesn’t take her meds unless she wants to. But anyway I totally understand what your saying. It’s so hard. Didn’t mean to make this about what I’m going through But I do understand
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Upstream, I am so very sorry. None of us should ever have to go through this. And I feel for those, who will. I completely understand and agree with you. I lost my mother to dementia not even a year ago and I am still struggling. In my case, I lost my mother to abandonment when she gave me away around the age of 4. That original grief always stayed with me in some way. We reconnected in time. Then I became her caretaker when she was diagnosed with dementia. I always wanted a relationship with my mother and if this was all I was going to get to get close to her at this point in life, I accepted it. Compassionately. But there was grief again, in the realization that I was losing my mother all over again. And as you say, slowly everyday. It was in many ways a sadder and deeper grief. I tried to use that time as much as I could to make up for what we lost earlier in our lives. The inevitable final loss was always lurking in the future. My mother lived like this for 5 years. In her passing, yet another loss, and more grieving. I am still grieving in my own way. I feel for you. My heart breaks for you too. I am so sorry. Please take care of yourself.
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Upstream
Don't know if I can make you feel better but can try to make you feel that you have others here who can empathise.
I am in similar situation. My Dad age 92 in care home since October last year. He has some form of dementia. Like yours decline has been rapid. He is completely unsettled. Never watches tv which he loved before. Just sits there and complains about how much he hates being there, complains about staff and food. It's all lies and very exhausting. I am an only child too so it's hard. Complains about it all the time. He says he's leaving care and I am so worried that he tries. He is capable of trying any lies to get what he wants. He asked one of carers to marry him . When she refused he wrote a note with his old address and phone number on it asking her to stay with him. Being nasty to me cos I won't do as he asks. Hope its a phase. Don't know how long I can go on like this. Haven't been to visit for a week. Self preservation.
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I know how hard it is, and my heart goes out to you. My mom has been in a care facility for almost 3 years. Lots of tears have been shed. I've been seeing a therapist and have cried there as well. Something for you to think about. It has helped me.
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hi i already lost my mom from it ..she went at home .but i say try to still do things with him often as you can .there are good days & bad my mom was a trooper to the end i guess i will grieve one day but so far i stay so busy i do not think much of it but she had the best care anyone could give her so you can try to remember the good times as much as you can & when you get them the good days now ..i hope they find a cure it is not a good way to end his life well good luck
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Dear Upsteam, I am a caregiver for Alzheimer’s and Dementia loved ones. I hear the stories and see the struggles that adult children have with their loved ones decline. I always tell them to wait for those sparks that let you know they are still there!! Play with your Dad. Get out the cars aor LEGO toys. Play and wait for the laughter!
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I went through this with my Husband for 12 years. He was easy to care for and compliant so thankfully I was able to keep him at home.
What I did love was looking each day for some bit of joy, the way he would try to "sneak" my breakfast when he though I was done. (I would leave my bowl with a bit of yogurt and fruit and while my head was turned he would grab the bowl and eat what I left!) Listening to him watch the Cubs game. While I have no idea if he was reacting to the game or just the excitement he picked up I have no idea but he seemed to enjoy it.
Look for the little things that may seem unimportant now but in a year or so they will mean more.
Go for walks, hold hands. continue to do the things that you always enjoyed before. Talk to him about your life, what you are doing. You never know what gets through. If nothing else I am sure he loves hearing your voice.
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Thank You All. Each comment and story help us to remember that we are not alone in this long journey. Sometimes I feel Crazy and think please let this be over soon. Mostly I am exhausted. May you all find a little joy somewhere today. Grace and Peace.
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By the way, this website got me through SO MUCH.......
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Both parents with dementia. Over 4.5 years. I was so overwhelmed with all of it plus family drama. Now I just want to squeeze them, and actually smell that horrible smell. It will play out how its suppose to. Hang in there, and my blessings go out to you. I am actually crying right now.
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